Have you contacted your local MP explaining your concerns?
The MEA received a letter from the Secretary of State for Work and Pensions.
 
The ME Association’s website contains a template letter for your use,  -
Write to your MP about the recent announcements on Welfare Reform 
May 29, 2025
 
On Tuesday (18.03.25), the Rt Hon Liz Kendall MP, Secretary of State for Department of Work and Pensions (DWP) announced the governments plans for welfare reform.
Over 120+ organisations and charities are concerned that these changes, especially the decision to change the eligibility criteria for PIP and make it even more difficult to obtain, will have a devastating affect on disabled people and the communities they represent, pushing many into financial hardship.
 
We know from a Scope report (2024) that life costs more for disabled people. Many people who have ME/CFS and Long Covid, which can both be a disabling and very debilitating condition already live in poverty as a result of these extra costs. Therefore the impact of disability benefits cuts would be disastrous.
The ME Association is actively challenging the government’s proposed welfare reforms and has launched a major project to defend the rights of people with ME and Long Covid.
We will shortly be publishing a formal position statement, meeting directly with key policymakers including the Minister for Disabled People, and launching a national survey to gather vital evidence from our community.
This work is a priority for the charity, and we’re committed to ensuring the specific needs and experiences of people with ME and Long Covid are clearly represented and heard.
Write to your MP
 
Ella Smith, Welfare Benefits Adviser to the ME Association has kindly drafted a template letter which can be used to write to your MP.  Please consider writing to your MP (List of Herefordshire and Worcestershire MPs) to express your personal concerns using our Template Letter available for your use. 
 
 
The ME Association (MEA) wrote to State for Work and Pensions.
MEA writes to the Rt Hon Liz Kendall,
Secretary of State for Work and Pensions  - The ME Association
March 17, 2025
Summary

• The ME Association (MEA) raised concerns to Liz Kendall about press reports indicating cuts to welfare benefits, stricter PIP eligibility, and changes to ESA assessments, which would negatively impact people with fluctuating conditions like ME/CFS and Long Covid.
• Despite years of collaboration with the DWP, assessment procedures for people with fluctuating conditions remain inadequate, often leading to unfair denials of benefits.
• The MEA calls for the government to reconsider proposed welfare reforms, as they could push individuals with ME/CFS into poverty and debt, and urges consultation with medical charities before implementing changes.

The MEA has written to Liz Kendall to express our deep concerns about press reports which indicate that she is about to announce cuts to some welfare benefit payments along with making it far more difficult to claim PIP/personal independence payment. We have since received acknowledgement of this letter from Liz Kendall's office.

Letter to Liz Kendall
15 March 2025
Dear Secretary of State
Welfare benefit reform
Along with representatives from several other medical charities that represent people with fluctuating and long term medical conditions (examples include AIDS/HIV,  inflammatory bowel disease, multiple sclerosis and rheumatoid arthritis), the ME Association (MEA) has worked with the DWP over many years to try and make the eligibility criteria and assessment procedures for sickness and disability benefits more fair and effective for this group of people.
 
In particular we have taken the view that where people are clearly unable to work they should be supported by the benefits system and not forced into trying to obtain work that they cannot do and that employers do not even want to offer to them. 
Equally, where someone is or may be able to carry out some form of work there must be far more incentives for employers to take on people who may require periods of sick leave and modifications to their duties in order to work along with flexibly in the benefit system to allow for a flexible or part time return to work or a failed return to work.
 
For your information I attach of copy of the very comprehensive report that the DWP Fluctuating Conditions Group produced on the challenges facing people with these conditions when it comes to applying for work related DWP benefits and the use of the Work Capability Assessment – which we understand will form part of the government review.
Unfortunately, despite our efforts over the years, which have also included working with Professor Malcolm Harrington on his major review of the Work Capability Assessment, the procedures for assessing and claiming ESA and PIP are still not fit for purpose if you have a fluctuating medical condition – where the severity of ill health and disability often varies throughout the day, from day to day and from week to week.  
As a result of having assessment procedures that do not meet the needs of people with fluctuating medical conditions, many people with moderate or severe ME/CFS, and Long Covid, are still being refused sickness and disability benefits.   They are only succeeding when there is a reconsideration of their case or they go to appeal - where the high rate of success helps to confirm that the initial assessment procedures are just not working.
People with ME/CFS and Long Covid are therefore fearful and frightened by the press reports this past week which indicate that the government is about to announce major welfare benefit reforms and spending cuts which will include stricter eligibility criteria for PIP, a reduction or freeze in the level of payments, changes to the ESA Work Capability Assessment, and reductions in payments relating to Universal Credit.
 
We are also surprised and disappointed to find that medical charities representing people with long term conditions have not been consulted about these changes.
The purpose of PIP is to provide people who have significant problems with care or mobility with the financial support which helps them to improve their quality of life and in some cases with the costs of returning to some form of employment - something that the government is obviously keen to encourage.  
Making it even more difficult to claim PIP, or reducing the financial support it provides, is going to have a very detrimental effect on people with ME/CFS and will result in some of them being forced into poverty and debt.
 
We are therefore calling on the government to listen to people with fluctuating medical conditions like ME/CFS and urgently reconsider the adverse effects of making these changes to PIP.
At the same time we do obviously recognise the case for reforming some aspects of the welfare benefits system.  So we are very willing to collaborate with the DWP to achieve meaningful change that will help people with ME/CFS. However, this must involve understanding and addressing the diverse needs of people who are ill and disabled, and not with cuts that could undermine their security and dignity.
Thank you for considering our concerns.  
We look forward to hearing from you and hopefully working with you on a benefit strategy that will help people with fluctuating medical conditions who are capable of returning to work and not penalise those who are genuinely unable to work.

Yours sincerely
Dr Charles Shepherd,
Trustee and Hon. Medical Adviser to the ME Association,
Member of the 2018-2021 NICE guideline on ME/CFS committee,
Member of the 2002 Chief Medical Officer's Working Group on ME/CFS

DWP Replies to Dr Charles Shepherd’s Letter
Regarding Welfare Cuts  The ME Association.
April 3, 2025
On the 15th of March, 2025, Dr Charles Shepherd, MEA Hon. Medical Adviser, wrote to Rt Hon Liz Kendall to express the ME Association's deep concern around press reports indicating she would announce cuts to welfare benefits. This letter was sent prior to the the parliamentary announcement and the release of the Green Paper on 18th March.
The ME Association intends to send a follow up letter to Rt Hon Liz Kendall and provide a response to the Green Paper consultation.

Letter
On the 3rd of April, the DWP replied - as follows:
Dear Dr Shepherd,
Thank you for your recent correspondence about benefit reforms.
The Pathways to Work: Reforming Benefits and Support to Get Britain Working Green Paper was published on 18 March 2025. The consultation sets out plans and proposals to reform health and disability benefits and employment support.
 
The Green Paper is an important staging post on a journey of reform, building on the vision and approach set out in the Get Britain Working White Paper in November 2024. It sets out our vision, strategy and proposals for change.
The Government wants to improve and refine its plans by consulting on certain measures as described within the paper. It is committed to putting the views and voices of disabled people and people with health conditions at the heart of everything it does.
 
The consultation - Pathways to Work: Reforming Benefits and Support to Get Britain Working - can be responded to via a Microsoft Form using the following link:  Green Paper Consultation
By emailing [email protected] or; by post at: Pathways to Work Consultation, Disability and Health Support Directorate, Department for Work and Pensions, Level 2, Caxton House, Tothill Street, London, SW1H 9NA.
Further details about the Green Paper can be found by accessing the following link: Information on Green Paper
 
Yours sincerely,
Head of the Ministerial Correspondence Team
Dr Charles Shepherd,
Trustee and Hon. Medical Adviser to the ME Association,
Member of the 2018-2021 NICE guideline on ME/CFS committee,
Member of the 2002 Chief Medical Officer's Working Group on ME/CFS

Further Information

• GOV UK: Biggest shake up to welfare system in a generation to get Britain working | 18th March 2025
• DWP: Pathways to Work: Reforming Benefits and Support to Get Britain Working  | March 2025
• MP Jo Platt: Parliamentary Question to DWP: Employment: ME/CFS and Long Covid  | 17th March 2025
• The ME Association: MEA signs Scope’s open letter to the chancellor regarding welfare cuts  | 18th March 2025
• Disability Rights UK: Green Paper published – £5 billion cuts proposed by scrapping the WCA and changed PIP assessment  | March 2025
  
• Guardian: Councils and NHS could face millions in extra costs due to disability benefit cuts | 24 March, 2025
  
• Disability Policy Centre: Welfare reforms likely to deliver no significant savings in “all pain and no gain” scenario, according to new analysis. | 24 March, 2025
  
• The ME Association: Science Norway: Almost no ME/CFS patients return to work | 25 March, 2025
• GOV UK: Government to listen, learn and deliver as consultation on transformational welfare reforms begins | 7 April, 2025
  

ME/CFS (Myalgic Encephalomyelitis/Chronic Fatigue Syndrome) and PCS (Post Covid) Services.
Herefordshire and Worcestershire Post Viral Fatigue Service..
 
To contact the Herefordshire and Worcestershire Post Viral Fatigue Service,
the Phone Number remains the same at Malvern Community Hospital - 01684 612671, the new email address is - [email protected].

Marina Townend, the Service Lead/Specialist Occupational Therapist of the Herefordshire & Worcestershire ME/Chronic Fatigue Syndrome and Post-Covid Syndrome Services, has again been in touch updating us with forthcoming changes to the NHS Worcestershire ME/CFS Specialist Services).  Marina joined us on Wednesday, 9 April, at our afternoon café meeting, and explained that the following information was emailed to their patients last week, as a follow up to the previous mailing.

Good afternoon
Many thanks to everyone who completed the patient survey about the new model for the ME/CFS and PCS services. I am writing to share a summary of the feedback we received.
 
How you feel about the changes.
The perception of the changes seems mainly positive, with a small minority expressing concern that the change is financially motivated and that there will be less resources available for both patient groups. I want to reassure you that this is not the case. The commissioner in our Integrated Care Board recognises the impact that these conditions have on sufferers and has chosen to invest in this service at a time when many Trusts are closing LC services, and many have never commissioned an ME/CFS service.
 
Some people thought that the sharing of resources may be more efficient in an integrated service, with easier access and increased support. We believe and hope that this will be the case – although we do acknowledge that with the current pressure in the NHS, we may never have all the resources that we would ideally like!
 
Many people with ME/CFS felt encouraged that it will be easier for them to receive a diagnosis. Others noted the overlap between the conditions, and thought it would streamline the services and make it simpler for GP’s and referrers.
 
There were some concerns that the differences between the conditions might not be recognised or addressed. All diagnoses are coded, for monitoring and research purposes, and ME/CFS and LC each have different codes.  We try to address each person as an individual rather than by their diagnosis - something that is especially important with these conditions as they can vary hugely between each person.
 
 
What you’d like to continue:
- 1:1 support
- Information groups
- Group support
- Employment support
- Support for carers/ loved ones
- Peer support
-  We plan to continue with all these things in the new service, in the same or similar formats to now.
 
 What else you’d like:
    >Access to a wider MDT
We will have improved access to specialist medical care in the new service and will continue to build on this. We have recently employed a physiotherapist, who is due to start in April, and we are hoping to recruit a dietician. We will be able to refer all patients to the fast-track pathway for NHS Talking Therapies if counselling is required. You will also be able to see a specialist GP (hopefully in post by July).
 
    >Better referral pathways for tests and other specialists
This is currently being discussed, as we recognise that the current system (where we have to go back to your GP to request tests, investigations and onward referrals) can be slow and work-heavy for colleagues in primary care.
 
  >Raising awareness and education for GPs and other health professionals
Educational sessions will be planned when the new service is established. Some GP’s do not seem to be aware that there is specialist provision for ME/CFS/LC exist locally, so communication will be sent out to all practices about the new service, with details of what we offer and how to refer.
 
    >Faster access to the service
We apologise that some people have had to wait a long time to be seen, for various reasons. The new service will be more streamlined, and our aim is for all new referrals to be assessed within 10 weeks. Due to staff sickness and vacancies, there is a waiting list already so we will not be able to achieve this immediately.
 
   >On-going support for those who have the condition for a long time
We recognise that, although some people make a full recovery, many will experience long-term effects of ME/CFS and LC. Unfortunately, there is high demand for the service, and we are unable to support everyone within the service indefinitely. We will offer an on-line support group for people after discharge, with the hope of being able to expand to localised face-to-face meetings in future. We are also going to trial annual reviews for the more severely affected patients, recognising that many GP’s do not offer this, even though it is recommended in NICE guidelines for ME/CFS.
 
      >More access to face-to-face appointments
Although much of our work is currently on-line, to help manage symptoms of fatigue, face-to-face appointments can be requested and are offered where clinically indicated. There is likely to be more capacity for this in the new service, with some clinics planned.
 
      >Patient-led support
A new development in the combined service will be Participation Partners. These are people with lived experience, who will be trained and supported to help others. We hope that a Participation Partner will be present in all our groups, and may take a lead in developing options for peer support in future.
 
     > A way to re-access the service
We have agreed with commissioners that patients have the option of self-referring directly to the service for 6 months after discharge. This bypasses the need to go via your GP, unless symptoms have changed significantly.
 
    >Follow up after groups
In the new service, all patients will be offered a 1:1 review after completing attendance at the group sessions. This will allow us to review what has been helpful and is working well, as well as identifying areas where more support may be required and making a plan to address these.
 
The name of the new service
Responses to the suggestions made were very evenly spread. Having read all the comments, including other suggestions, it was decided that the new service will be called the Post Viral Fatigue Service. We appreciate this will not reflect everyone's experience of ME/CFS or LC (e.g. you may have ME/CFS without having had a virus) but the vast majority will fit into that description. The service is for everyone with ME/CFS and LC, whether or not symptoms followed a viral infection, and GP's will be aware of that.
 
 
Over the next few weeks, we will be gradually transitioning to the combined service but you shouldn't notice any significant changes to your care. We will continue to be based at Malvern Community Hospital, with the same phone number. We do have a new email address though: [email protected]  Please use this for future correspondence.
 
 We greatly appreciate your comments and suggestions, and will use them in our quest to improve the service going forwards. There will be on-going opportunities to provide feedback via Care Opinion (more information about this shortly!) so please keep in touch and let us know how you are finding things.
 
​Kind regards
Marina
Marina Townend
Service Lead/ Specialist Occupational Therapist
Post Viral Fatigue service
Malvern Community Hospital | 185 Worcester Road | Malvern | WR14 1EX
Tel. 01684 612671

Future Changes combining the local Services. 
Please respond with your suggestions this week.
 
Marina Townend is the Service Lead/Specialist Occupational Therapist, of the Herefordshire & Worcestershire ME/Chronic Fatigue Syndrome and Post-Covid Syndrome Services.  She has been in touch updating us with forthcoming changes to the NHS Worcestershire ME/CFS Specialist Services). 
 
Marina informed us that this week, an email went out to all patients on their current ME/CFS and PCS caseloads, and the Recovery and Management (RaM) Group - totalling approximately 400 people, giving them a survey to complete.

Good morning,
 
At the moment in Herefordshire and Worcestershire there are two separate NHS services for people living with post-viral syndromes.   One for people with Post Covid Syndrome (PCS) (sometimes called Long Covid) and another for people with Myalgic Encephalomyelitis / Chronic Fatigue Syndrome (ME/CFS).
 
There is now a plan to bring the two services together which will be helpful for a number of reasons:

• Less Covid testing has meant some people cannot access either service because they don’t have a clear diagnosis.

• There is an increasing number of people who meet the criteria for both conditions.
• GPs sometimes aren’t sure which service to refer patients to as they have very similar symptoms.  The new service will be easier to refer to, and may allow more people to access treatment and support.

• The Long Covid Service has been funded on an annual basis up until now.  The new service has long term funding which means patients with Long Covid will get the same offer of longer-term support like those with ME/CFS. 
• It will allow patients with ME/CFS and Long Covid to access specialist GP and Consultant input which is not always possible now.

 
We know this change might be worrying for you and the people who support you.  We want to let you know that many of the staff already work across both services and are knowledgeable about both ME/CFS and PCS.  We will continue to treat people based on their symptoms and needs, using the same group work and 1:1 support we offer now.
 
We want a service that is helpful to all, and those who care for you.  To do this we want to know how people feel about the proposed changes,  Please complete the attached ME/CFS specialist services survey by the END OF FEBRUARY if you can.   If you need help to fill it in or would like to talk to us about it instead, please let us know.

The Worcestershire ME/CFS Therapy Team can currently be contacted through Malvern Community Hospital. (01684 612671   [email protected] and their webpage NHS Worcestershire ME/CFS Specialist Services).
 
 
Marina continued with further news about the local combined services.  She explained that all residence of Herefordshire and Worcestershire, with Post Covid Syndrome (PCS) (sometimes called Long Covid), or Myalgic Encephalomyelitis / Chronic Fatigue Syndrome (ME/CFS), are invited to share their thoughts. 
 
By the END OF FEBRUARY, please email [email protected]  with your comments or suggestions.  Please include the subject "combined services".
Please include how you feel about the plan bringing the two services together to create one service, and what would you like to see the new service do?
Have you any suggestion what to call the new service?  Maybe, Post Viral Fatigue service;  Living well with ME/CFS and Long Covid;  or Wellbeing for Long Covid and ME/CFS (the WELCOME service);  or your further thoughts.
 
Marina, confirmed that there will be wider communications going out in the next few weeks, including to the general public, GPs and other health professionals.  We also understand from Marina that it is hoped to follow this up with some GP training, including around the NICE guideline recommendations that patients receive an annual review.  Also, before the new combined service goes live on 1st April, the ME Association (MEA) and British Association of Clinicians in ME/CFS (BACME) will be updated with the Worcestershire and Herefordshire.NHS Services for people living with post-viral syndromes.

An Update on the local NHS ME/CFS situation received on 3 January 2024, from -
Marina Townend, Specialist Occupational Therapist/Team Lead, of the ME(Myalgic Encephalomyelitis),/CFS (Chronic Fatigue Syndrome) and PCS (Post-Covid Syndrome) Services.
 
2023 saw an expansion of our little team, with many clinicians continuing to work across both branches of the service.  Sara Young (OT) is seconded full-time as PCS clinical lead and we recently welcomed Janet Piper, OT, to the ME/CFS service, to cover the secondment.  We have also recruited to a Therapy Assistant post (Ceri Howell), and have colleagues Nikki Mills (Physiotherapy) and Louise Anderson (OT) working via the NHS bank with patients with Long Covid.  Although we have still been unable to secure medical input for the ME/CFS service, Dr Matthew George is our lead GP for the PCS side of things.  Kate Jewell and Kirsti Barnes continue to do a great job as our administrators, and Mya Krishnan and Helen Ayres are the team's Psychologists.  I remain Team Lead across both PCS and ME/CFS.
 
Following the service level agreement with Birmingham and Solihull ME/CFS service, Dr Silva has now seen the 50 patients for which he was contracted. We are currently asking GP's to refer patients who do not have a confirmed diagnosis of ME/CFS to other services for assessment, and we then offer support and treatment.  As before, this situation is not ideal but it allows us to provide a service more locally for people in Herefordshire and Worcestershire, and we continue to work with our commissioners and the Trust board to try to find a better solution.  We still receive a steady stream of referrals that meet our service criteria.
 
Feedback from patients in the PCS service, including those who attend the Ways to Wellbeing programme, suggests the immense value of peer support and this year, we will be working with people who have Long Covid to facilitate a peer support group.  A lot of people have shown an interest in getting involved, which is great as the load can be shared and it allows for flare ups and relapses when they occur. 
 
Some of those who attend the ME/CFS Recovery and Management group also expressed a desire to be able to connect more easily with their peers outside of the bi-monthly group sessions.  A small working party have been looking at additional ways to meet and share (on-line and in person), and plan to pilot something later this year.  The hope is that this will increase the number and variety of opportunities for connection, and add to what is already on offer - e.g. the Worcestershire M.E. Social Group meetings.
 
Our many thanks to Marina, for updating us with the situation at the ME(Myalgic Encephalomyelitis),/CFS (Chronic Fatigue Syndrome) and PCS (Post-Covid Syndrome) Services., and for joining us at a few of the Worcestershire M.E. Social Group meetings during 2023.  Marina, and members of the NHS team are welcome at future meetings.
 
For further information concerning the NHS ME/CFS Specialist Services (Worcestershire), and how to obtain a new ME/CFS diagnosis see NHS ME/CFS Specialist Services.
 
After you have received a diagnosis , request a referral through your GP to the Worcestershire ME/CFS Therapy Team who can be contacted through Malvern Community Hospital. (Contact Information: 01684 612671   [email protected] and their webpage NHS Worcestershire ME/CFS Specialist Services).

•  Hereford  •  Local News  •  N.H.S. 
•  Worcestershire  •  Worcestershire M.E. Social Group

Marina Townend, Specialist Occupational Therapist/Team Lead, of the ME/Chronic Fatigue Syndrome and Post-Covid Syndrome services, joined us again at the Social Group’s meeting in July.  At that time, Marina confirmed the details of the ME/CFS and Post-Covid Syndrome services therapists.
 
• Marina Townend, Specialist Occupational Therapist Team Lead ME/CFS Service (5 days/week).
• Sara Young (Occupational Therapist) Long Covid Clinical Lead.  (4 days/week).
• Helen Ayres (Psychologist) ME/CFS & Long Covid teams  (3 days / week)
• Ceri Howell, (Therapy Assistant) ME/CFS & Long Covid teams  (5 days / week).
• Mya Krishnan, (Clinical Psychologist), ME/CFS teams  (2 days/week). 
• Nikki Mills, (Physiotherapist), Long Covid team (1.5 days/week)
• Carrie Garrett, (Speech & Language Therapist, Long Covid team (1 session/month).
 
Information from the Herefordshire & Worcestershire Health & Care NHS Trust website, includes - Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome (ME/CFS) :-
The main aspect of our treatment is our Lifestyle Management group programme, held over 9 sessions.  It offers patients the opportunity to learn more about the ways in which they can manage their condition, with the aim of improving functional independence and quality of life.
Following discharge
The Recovery and Management (RaM) group is run on a bimonthly basis. It is open to anybody who has previously received treatment from our service and has now been discharged.  The group aims to provide individuals with a feeling of connection, and an avenue to access support for their ME/CFS, without having to be re-referred to the service.

The topic at a recent RaM group meeting was - “Looking to the future of the RaM group”, and a member of the Recovery and Management (RaM) group recently shared the following information :-
It was a brainstorming meeting about how we wanted the RaM group and meetings to proceed.  Marina is keen to keep it going.  We all said how much we appreciate it and there was a lot of positive input as to how it could move forward.
Possibly alternate face to face/zoom meetings, some speakers, some swapping info and ideas and learning from one another, etc.  Plus also, maybe an online forum of some kind.
One suggestion was having some kind of "working" group" to progress these ideas and volunteers have been requested, so we'll see how that goes.

Have you been to any of the RaM Group meetings?  Share your thoughts by contacting the social group
 
Our Group’s blogs of 15 April, 9 March, and 7 January give information received from Marina Townend, Specialist Occupational Therapist/ Team Lead, of the Worcestershire & Herefordshire ME/ Chronic Fatigue Syndrome and Post-Covid Syndrome services.  Marina has been updating us on the situation at the Herefordshire and Worcestershire NHS ME/CFS Local Services, and responding to our queries.

•  Hereford  •  Local News  •  N.H.S. 
•  Worcestershire  •  Worcestershire M.E. Social Group

Letters from Worcester MP and NHS H&W.  Plus, NHS H&W Advert.
 The Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) Herefordshire & Worcestershire Health and Care NHS Trust Service.  This is a specialist part-time service that now delivers support and treatment to people with ME/CFS within community settings across Herefordshire and Worcestershire. 
 
Letters from Worcester MP and NHS H&W
At the end of June we received a letter from Robin Walker MP for Worcester, who had been in touch with NHS Herefordshire & Worcestershire (NHS H&W) on our Group’s behalf, regarding concerns about the decommissioning of the local ME/CFS diagnosis service.  The response from Simon Trickett, Chief Executive of NHS Herefordshire and Worcestershire ICB, explained the current situation with the diagnostic pathway for patients with suspected ME/CFS.

Simon Trickett advised that the service has not been decommissioned by NHS Herefordshire and Worcester, but the CFS service is under considerable pressure due to recruitment difficulties.  He pointed out that this is having a significant impact on Herefordshire and Worcestershire Health and Care Trust’s (HWHCT) ability to safely deliver the service to its patients, and unfortunately the service can only accept patients who have been officially diagnosed with ME/CFS at present.
 
The letters from Robin Walker MP, and Simon Trickett, both refer to a suggested alternative pathway for people who are experiencing ME/CFS pain - the Specialist Pain Management Programme.
 
 
Plus, NHS H&W Advert. (from MEA website)
The ME Association (MEA), raised concerns,
Herefordshire and Worcestershire ME/CFS Service - Feedback Required.
July 10, 2023
Concerns are, not surprisingly, being raised with us about a job advert for this service and some of the information on the cause of ME/CFS on the website for this service:
More information on the Herefordshire and Worcestershire ME/CFS Service
BMJ job advert


ME Association Comment
Dr Charles Shepherd , Trustee and Hon. Medical Adviser
Concerns include:
In particular, is the use of the term ‘incremental pacing' - as this is not a term that is used in the new NICE Guideline on ME/CFS.
The new NICE Guideline makes it clear that incremental increased in activity, along with graded exercise therapy, are no longer recommended (in section 1.11.14 – Box 4).
The development of ‘psycho-educational interventions' for both patients and carers is also concerning as it is not clear what this means.
Service website
It is very disappointing to find in the various information leaflets that some of the main (but unproven) causes of ME/CFS are listed as:
Personality
Childhood trauma
Beliefs and attitudes
Excessive rest
Mood disorders
However, there is no mention of any biomedical abnormalities involving the brain, muscle, endocrine and immune systems.
Again, this information is not consistent with current thinking on the cause of ME/CFS, or the new NICE guideline on ME/CFS.
 
Feedback required
Before taking this any further with the NHS Trust it would be very helpful to have feedback from anyone who is using/has used this NHS referral service. Please email: [email protected]
 
Update 10.07.23
The Herefordshire and Worcestershire ME/CFS Service responded:

Dr Charles Shepherd has sent the following email:
 
Dear Herefordshire and Worcestershire NHS Trust
Thank you for withdrawing this job advert so quickly and agreeing to review the content of your website information on the causes and management of ME/CFS - hopefully bringing this into line with all the information and recommendations in the new NICE guideline on ME/CFS.
As you will have noted from our social media announcement I was intending to contact you once we had received some feedback from our members on your ME/CFS referral service.
Whilst there has been some positive comments on our Facebook page coverage there are several issues of concern that need to be addressed.
 
In particular:

1. Some GPs do not appear to know that this referral service even exists.  This has resulted in some people with ME/CFS being referred to Bath, Bristol or Birmingham for secondary care. And some have not been able to obtain a referral for expert help with either diagnosis or management.
2. The use of various Work Sheets - we know from previous discussion with our members that most people with ME/CFS find these are time-consuming to complete and are not particularly helpful in their management.  This is a view that I would share.

 
The ME Association produces a wide range of information on all aspects of ME/CFS for both patients and doctors.
The following (free to download) publications may be of interest and we would be happy to supply paper copies if required:

• Summary of Key Points from the NICE Guideline
• Diagnosing ME/CFS – The Importance of an Early & Accurate Diagnosis
• Long Covid and ME/CFS – Are they the same condition?
• Activity and Energy Management and Pacing

Our new booklet on pain management will be available shortly.
Kind regards, Dr Charles Shepherd,  Hon Medical Adviser
Member of the NICE guideline committee on ME/CFS
 
 
Worcestershire ME Support Group
(Our Group’s Website Blogs & Information): 2023.01.07 - 2023.04.15

Our Group’s blogs of 15 April, 9 March, and 7 January give information received from Marina Townend, Specialist Occupational Therapist/ Team Lead, of the Worcestershire & Herefordshire ME/ Chronic Fatigue Syndrome and Post-Covid Syndrome services.  Marina has been updating us on the situation at the Herefordshire and Worcestershire NHS ME/CFS Local Services, and responding to our queries.  Marina’s updates have included “Changes to the Worcestershire NHS Service, following the revised NICE (The National Institute for Health and Care Excellence) Guidelines, published in October 2021”.
 
 
New MEA Booklet:
Pain Management in ME/CFS by Dr Charles Shepherd 
July 14, 2023
 
Dr Charles Shepherd, Hon. Medical Adviser to the ME Association, has written a new booklet on Pain Management in ME/CFS. It can be purchased for £1 from the website shop along with a full range of literature covering other important topics including more detailed information on prescription drugs for pain relief that Dr Shepherd also refers to in this new booklet.
 
Introduction
Although a small but significant minority of people with ME/CFS experience little or no pain during the course of their illness, the majority - probably around 75% - do. When pain occurs, it can do so in several different forms and with varying degrees of severity.
Knowing what causes pain in any condition can obviously be very helpful in the way it is managed. However, in the case of ME/CFS, no significant research has been carried out into the cause. We therefore know very little about why some people with ME/CFS suffer severe and persistent pain and others have low levels of pain or no pain at all.
 
When it comes to pain management, the best we can do right now is to work on the basis that there may be faults in the way in which messages about pain from various parts of the body -  muscle, joints, abdomen, etc - are transmitted up the spinal cord to centres in the brain that control how we respond to pain.
Equally, it’s also possible that the way in which these pain control centres in the brain dampen down pain is also at fault. And this is why, in addition to conventional pain-relieving drugs, doctors sometimes prescribe drugs that normally have other uses but affect chemical transmitter systems in the brain.
Despite pain being such an important part of ME/CFS, this is one symptom that tends to receive very little attention in medical descriptions of the illness.  Consequently, pain is a key symptom that is often not managed very well by health professionals.
 
This MEA article on their website, explains “What sort of pain occurs in ME/CFS?”, plus the “Topics covered in this booklet”
 
 
The new Myalgic encephalomyelitis (or encephalopathy)/ chronic fatigue syndrome: diagnosis and management. NICE guideline [NG206] was published in October 2021.
 
See also from our website -
 
NICE ME/CFS: new Guideline (New downloadable Publications).
19/1/2022
 
NICE ME/CFS: new Guideline (Reactions).
25/11/2021
 
NICE ME/CFS: new Guideline now Published
29/10/2021

•  Hereford  •  Local News 
•  M.E. Association  •  MP 
•  N.H.S.  •  N.I.C.E. 
•  Worcestershire 
•  Worcestershire M.E. Social Group

World ME Day  - The disease where pushing harder can make you sicker.
On May 12th each year, World ME Alliance focuses on learning about, raising awareness of, and campaigning around Myalgic Encephalomyeltitis.
 
World ME Alliance - (We are a unique alliance of ME organisations from around the world.  Our membership is made up of senior leads/representatives from national ME organisations, working together to achieve change for people with ME at a national and international level.) 
For 2023 World ME Alliance are focusing on the key aspect of ME that everyone should know about: that pushing harder can make you sicker.  The technical term for this is post-exertional malaise (PEM).
Post-exertional malaise (PEM) is something that everyone with ME experiences. 
It is a worsening of symptoms after physical, mental, or emotional exertion that would not have caused a problem before the illness and is the hallmark symptom of ME. For some patients, sensory overload (light and sound) can induce PEM. PEM intensifies the severity of symptoms and may last days, weeks, or permanently.  The symptoms typically begin to worsen 12 to 48 hours after the activity or exposure.
 
The World ME Alliance website gives news from around the world, and suggestions as to how you can be involved.
 
 
ME Research UK publicise - Walk for ME 2023 - 
 
The aim of Walk for ME is to get as many people as possible - especially the family and friends of those affected by ME -  to do a sponsored walk, run, swim or ride of whatever length they feel comfortable with.
There is no minimum distance, no targets, and, although it runs principally through ME Awareness Week (2nd week in May), no set dates. You choose when you wish to walk, the distance, the location and the charity to support.  No matter what you do step-by-step, you will be supporting a great cause and also raising awareness with every stride.
 
It is hoped that as many friends and loved ones as possible will do a sponsored walk or other sponsored event during ME Awareness Week, although you can also do a walk, run, swim or ride at any other time if you prefer.
“The whole idea is that the friend or family member is doing something that their loved one would love to be able to do but can’t.“
Further information on the Walk for ME Just Giving page.
 
 
#MillionsMissing 2023! Announce -
#MillionsMissing 2023 will be held on May 12, 2023, at the Washington Monument in Washington, DC.  The event will feature an art installation and a press conference. 
#MEAction will host #MillionsMissing 2023 in partnership with Body Politic to demand bold, urgent governmental action for the millions of people living with myalgic encephalomyelitis (ME), Long COVID, and other infection-associated complex chronic diseases.
The pandemic showed the public what people with ME already knew: that the government, our healthcare systems, and society at large have systematically deprioritized people with infection-associated chronic illnesses.
The #MillionsMissing 2023 website explains how you can see the press conference, and become involved.
 
 
Action for M.E. (AfME) announce -
Blue Sunday;  The Tea Party for M.E.; 14th May 2023.
 
Champion fundraiser Anna Redshaw’s Blue Sunday Tea Party is celebrating its 10th anniversary in 2023 and has so far raised over £70,000 for M.E. charities across the world. Join Anna and Action for M.E. this May to raise vital funds for people living with M.E., whilst enjoying tea, cake and community.
Anna has been running the Blue Sunday Tea Party for M.E. since 2013, as a way to fundraise but also to break the isolation so often experienced by people with M.E. You can read more about how the Blue Sunday Tea Party started on Anna’s blog.
Full information on How To Take Part available from AfME 
 
 
The ME Association (MEA) announcement -
ME Awareness Week - pleasant surprises from the Gloucestershire Friendship Group -
 
If paradise could be twice as nice, you’ll never find a better bunch than the Gloucestershire ME/CFS Friendship Group. They’ll be holding their annual ME Awareness Week bash on Saturday, 13th May and this year they’ve got a couple of surprises up their sleeves.
That afternoon, members will be out in force in Quedgeley Community Centre, near Gloucester, for a natter, a cuppa, a slice or two of some good home-bakes and a raffle stocked with over 20 prizes. The event will be held between 1.30 and 3.30pm.
 
 
Watch out for further announcements during week, plus a reminder -
Please join us during M.E. Awareness Week, when we look forward to greeting Marina Townend, Specialist Occupational Therapist/Team Lead, of the Worcestershire & Herefordshire ME/Chronic Fatigue Syndrome and Post-Covid Syndrome Services.
 
Our Afternoon Café Meeting will be held on Wednesday, 10 May, from 2.00 - 3.30 pm, in the Next Café, above the Next store at the Elgar Retail Park, Blackpole, Worcester, WR3 8HP.  Join us in the Next Café, above the Next store at the Elgar Retail Park, Blackpole, Worcester, WR3 8HP (There is a lift and escalator in the store, plus plenty of parking, including blue badge spaces near the main entrance.)  
 
All people with M.E., CFS, FMS, and their carers, friends and relatives, are welcome at all Worcestershire M.E. Social Group gatherings - please join us whenever it suits you.
Our recent Worcester Afternoon Café Meetings blog, gives future dates, and further information.
 
Marina Townend, recently updated us on the situation at the Herefordshire and Worcestershire NHS ME/CFS Local Services.  This is given in our recent Worcestershire NHS ME/CFS Local Services News blogs in April and March .
 
 
BACME (The British Association of Clinicians in ME/CFS) which is a multidisciplinary organisation for UK professionals who are involved in the delivery of clinically effective services for patients with ME/CFS, also explains -
Herefordshire and Worcestershire ME/CFS Service
The service supports people with a confirmed diagnosis of ME/CFS, age 18 and over, who have a GP based in Herefordshire or Worcestershire.  It offers therapeutic intervention by Occupational Therapists and Psychologists on a 1:1 and group basis, much of which is provided virtually (video or telephone call), although clinic appointments are available if preferred.  We can also undertake home visits if clinically indicated.


•  Action for ME  •  Hereford  •  Local News 
•  #MEAction  •  M.E. Association  •  Meetings 
•  MERUK  •  N.H.S.  •  Post COVID Syndrome (Long COVID)  
•  Worcestershire •  Worcestershire M.E. Social Group

The Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome (ME/CFS) Herefordshire & Worcestershire Health and Care NHS Trust webpage was updated in January, with information included on our ME/CFS Local Services webpage update blog.      
This is a specialist part-time service that delivers support and treatment to people with ME/CFS within community settings across Herefordshire and Worcestershire.
 
 
At the end of March, we received further information from Marina Townend, Specialist Occupational Therapist/ Team Lead, of the Worcestershire & Herefordshire ME/ Chronic Fatigue Syndrome and Post-Covid Syndrome services, updating us on the situation at the Herefordshire and Worcestershire NHS ME/CFS Local Services, and responding to our queries.  Marina hopes to be with us at our next Worcestershire M.E. Social Group Afternoon Café Meeting (see end of this blog).
 
 
Changes to the Worcestershire NHS Service, following the revised NICE (The National Institute for Health and Care Excellence) Guidelines, published in October 2021
Marina informed us -
We have gone through the changes in the revised guidelines as a team, and developed an action plan to ensure that we are following them.  Some of these actions are still work in progress as I'm sure you can appreciate that it is time-consuming, and we are already under a huge amount of pressure carrying out our day-to-day work. However, we check in each team meeting to make sure these have not been forgotten and are still progressing.
Actions included changing our language to ME/CFS from CFS/ME (in written format and when speaking), updating our referral protocol and service literature to ensure that they reflect new guidelines, developing a workshop for carers, and compiling a care and support plan.  We are in on-going conversations with our commissioner about medical cover and also regarding how we work with people who are severely affected.
We were not offering CBT or GET as a 'cure' for ME/CFS so our approach to therapy has not changed - we see these interventions as beneficial for some people, at the correct time, and if applied in an appropriate manner. 
 
 
The Current Worcestershire NHS ME/CFS Specialist Services, -
We recently mentioned to Marina -
On the NHS ME/CFS Service webpage, it states - “we work as a multi-disciplinary team with Occupational Therapists, Physiotherapists and Psychologists”.
Marina’s response included -
We have Nikki Mills (Physiotherapist) working in the Post Covid team 1.5 days/week.  She doesn't cover ME/CFS, but will offer guidance and resources to the team at times.  We are very much hoping to recruit a physiotherapist still and are in the process of going to recruitment again.
The PCS service also has access to Carrie Garrett, a Speech and Language Therapist, who offers us approximately 1 session/month.
 
 
Diagnosing Long Covid
Marina informed us -
Diagnosing Long Covid is more straight forward than ME/CFS, and GPs seem to feel more comfortable with this as many people have had a positive Covid test, or recognise the symptoms of the Covid virus.  If other possible causes of on-going symptoms have been ruled out, Long Covid is diagnosed by the GP.
This situation is likely to change, however, as testing is reduced, and new variants have different symptoms which are maybe less recognisable as Covid-19.  We anticipate that there will be more referrals to the ME/CFS service, and hope that the distribution of funding will reflect this.  It is one of the reasons why it has been decided that the PCS service should sit under the umbrella of the ME/CFS service, to allow some flexibility with this.  Referral to the PCS service is mainly via GPs, but other clinicians sometimes refer as well.
 
 
Previous news from Marina Townend is available from our blog last month.
 
 
Next Month
Marina informed us -
I am hoping to come to the Social Group on 10th May.  I look forward to seeing you again and will be very happy to answer any questions then. 


Please join us, when we look forward to greeting Marina at our next Afternoon Café Meeting. This will be held during ME Awareness Week on Wednesday, 10 May, from 2.00 - 3.30 pm, in the Next Café, above the Next store at the Elgar Retail Park, Blackpole, Worcester, WR3 8HP.
 
Our recent Worcester Afternoon Café Meetings blog, gives future dates, and further information.
 
 
The new Myalgic encephalomyelitis (or encephalopathy)/ chronic fatigue syndrome: diagnosis and management. NICE guideline [NG206] was published in October 2021.
 
See also from our website -
 
NICE ME/CFS: new Guideline (New downloadable Publications).
19/1/2022
 
NICE ME/CFS: new Guideline (Reactions).
25/11/2021
 
NICE ME/CFS: new Guideline now Published
29/10/2021

•  Hereford  •  Local News 
•  Meetings  •  N.H.S. 
•  N.I.C.E.  •  Post COVID Syndrome (Long COVID)  
•  Worcestershire  •  Worcestershire M.E. Social Group

Invite your MP to join the next meeting of the All Party Parliamentary Group on ME.  Explain your experiences to your MP, especially since the new NICE guideline was published in October 2021.
 
The ME Association (MEA) give details -
Invite your MP to join the next meeting of the All-Party Parliamentary on M.E
March 8, 2023
The next meeting of the All-Party Parliamentary Group (APPG) on M.E. will be the Annual General Meeting on Tuesday 21 March 2023 from 3:30pm-4:30pm. In addition to reconstituting the APPG, the AGM will include:

• a one year-on review of the implementation of the new NICE guideline including a presentation from Action for M.E. on the results from a Freedom of Information request regarding the implementation of the revised NICE Guideline responded to by 106 ICB’s and NHS Trusts.
• a discussion of support for those with severe ME
• consideration of our workplan for the coming year.
• Minutes of the AGM will be shared in accordance with APPG rules.

 
We'd be really grateful if you could invite your MP to attend.  Your MP can get further information by emailing Carol Monaghan, MP (Chair of the APPG on M.E.). 
Action for M.E. and The ME Association jointly share the secretariat responsibility for the APPG. 
 
Template email included by the MEA., for your use.
 
 
At the end of April 2022 our Worcestershire Social Group Blog announced - Decommissioned - ME/CFS Service at Worcestershire Acute Hospital .  If this has affected you, or you have any other concerns, this is your opportunity to let your MP know?
 
Plus recent local news:
Worcestershire NHS ME/CFS Local Services News
 
The Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome (ME/CFS) Herefordshire & Worcestershire Health and Care NHS Trust webpage was updated in January, with information included on our ME/CFS Local Services webpage update blog.
 
Plus, we’ve received further information from Marina Townend, Specialist Occupational Therapist/ Team Lead, of the Worcestershire & Herefordshire ME/ Chronic Fatigue Syndrome and Post-Covid Syndrome services, updating us on the situation at the Worcestershire NHS ME/CFS Local Services, and responding to our queries.
 
 
The new Myalgic encephalomyelitis (or encephalopathy)/ chronic fatigue syndrome: diagnosis and management. NICE guideline [NG206] was published in October 2021. 
See from our website -
 
NICE ME/CFS: new Guideline (New downloadable Publications).
19/1/2022
 
NICE ME/CFS: new Guideline (Reactions).
25/11/2021
 
NICE ME/CFS: new Guideline now Published
29/10/2021


•  Action for ME •  A.P.P.G •  Hereford •  Local News 
•  M.E. Association •  MP •  N.H.S. •  N.I.C.E. 
•  Parliament U.K. •  Worcestershire

 The Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome (ME/CFS) Herefordshire & Worcestershire Health and Care NHS Trust webpage was updated in January, with information included on our ME/CFS Local Services webpage update blog.      
 
This week, we’ve received further information from Marina Townend, Specialist Occupational Therapist/ Team Lead, of the Worcestershire & Herefordshire ME/ Chronic Fatigue Syndrome and Post-Covid Syndrome services, updating us on the situation at the Worcestershire NHS ME/CFS Local Services, and responding to our queries.
 
Diagnosing ME/CFS,
Marina informs us -
Unfortunately, we are still unable to confirm a diagnosis of ME/CFS within this service, despite our continued efforts to resolve this situation.  Last year, a service level agreement was made with Birmingham and Solihull Trust whereby the Consultant in their ME/CFS service would assess 50 people within Herefordshire and Worcestershire who have a suspected diagnosis of ME/CFS. Once a diagnosis has been confirmed, we then provide a service to those patients.  This temporary arrangement has worked well but there isn't capacity to continue so we need to find another solution. 
We have been working closely with our commissioner to identify various options, and these are being discussed with GP's and at executive level within the Trust and ICB. I hope a model will be agreed soon and look forward to local people being able to receive a diagnosis (and therefore support and treatment) in a timely way.
In the meantime, GPs continue to refer to this service.  We advise about other options for diagnosis (as detailed on your website) and hold a list of the patients who are in this position.  We have also told people about the (paying) Healthcare service that Action for ME offer, but appreciate this is not an option for everyone. 
 
Action for ME’s "Healthcare Services for M.E." (mentioned by Marina above).
Following our merger with The ME Trust in February 2022, we are now able to offer Healthcare Services alongside our Information and Support, Family Support and Advocacy services.
Click on the menu for more information about each clinical service, including how to refer yourself and details of fees.
Action for ME give details of bursary support on their website.


Covid-19,
Marina informs us -
Since October 2021, the Post Covid Syndrome (PCS) service sits under the umbrella of the ME/CFS service.  Sara Young (OT) has been seconded to the Clinical Lead post, and Helen Ayres (Psychologist) and I both work additional hours to staff the PCS service.  Demand has been very high, and it has been difficult to recruit to the service due to the way that the government provides funding on an annual basis at present. 
 
The Current Worcestershire NHS ME/CFS Specialist Services, -
Marina informed us -
We have recently welcomed Ceri Howell, Therapy Assistant, to the team and she works full-time hours across both services. Mya Krishnan, Clinical Psychologist, also started with us last May, working 2 days/week. 
I am currently covering all the Occupational Therapy input in the ME/CFS service. Unfortunately, the team has been without full admin support for the past 14 months, which has been difficult but will hopefully improve soon.
We continue to offer 1:1 and group interventions, mainly (but not exclusively) on-line as the feedback we have received suggests that this is generally helpful to manage fatigue.  We are starting to get more referrals from Herefordshire GP's now, and still receive a steady stream of referrals for people with the condition who live in Worcestershire.
 
Marina also apologised for the time it has taken her to get back to us.  She explained - - it has been an even busier couple of months as I have had two 3rd year students (OT and Physiotherapy) with me and the team, and new staff members to induct.  All very positive but also time consuming...!
We are still making edits to our website, and any feedback is welcome as we are keen to improve it further, within the corporate constraints of design. I am aware there are various typos and some links that need updating, and I am still liaising with our Comms team about these so hopefully the website will be amended soon. 
I was very sad to hear about Warwick but I'm pleased that you have resumed your meet-ups, and hope to come along to one of these in the next couple of months.  It has been a challenging time for many over the past few years, and support from us all is valued and much needed.
 
The new Myalgic encephalomyelitis (or encephalopathy)/ chronic fatigue syndrome: diagnosis and management. NICE guideline [NG206] was published in October 2021.
 
See also from our website -
 
NICE ME/CFS: new Guideline (New downloadable Publications).
19/1/2022
 
NICE ME/CFS: new Guideline (Reactions).
25/11/2021
 
NICE ME/CFS: new Guideline now Published
29/10/2021
 
 
Worcester Afternoon Café Meetings
 
Our next Afternoon Café Meeting will be from 2.00 - 3.30 pm, on Wednesday 12 April, in the Next Café, above the Next store at the Elgar Retail Park, Blackpole, Worcester, WR3 8HP.  (There is a lift and escalator in the store, plus plenty of parking, including blue badge spaces near the main entrance.)  
 
Our recent Worcester Afternoon Café Meetings blog, gives future dates, and further information.
 
•  Action for ME  •  Coronavirus (COVID 19)  •  Hereford 
•  Local News  •  Meetings  •  N.H.S.  •  N.I.C.E.  •  Post COVID Syndrome (Long COVID)   •  Worcestershire  •  Worcestershire M.E. Social Group